Identifying data sources for a national population-based registry: the experience of the Spanish Rare Diseases Registry

Affiliations

• ¹ Area of Epidemiology, Sub-directorate of Health Promotion and Prevention, General Directorate of Primary Care, Health Department of the Autonomous Government of Madrid, Spain. Electronic address: anaclarazoni@gmail.com.
• ² Area of Epidemiology, Sub-directorate of Health Promotion and Prevention, General Directorate of Primary Care, Health Department of the Autonomous Government of Madrid, Spain.
• ³ Research Institute for Rare Disease, Institute of Health Carlos III, Madrid, Spain.
• ⁴ Operative Planning and Evaluation Division, Health Area, Catalan Health Service (CatSalut) Autonomous Government of Cataluña, Spain.
• ⁵ Epidemiology & Surveillance Service, General Directorate of Public Health, Health Department of the Autonomous Government of Asturias, Spain.
• ⁶ Dep. of Pathology & Neuropathology, University Hospital of Vigo (CHUVI-SERGAS), Spain; Neurosciences Research Group 'NC-CHUVI', Instituto de Investigación Biomédica de Vigo (IBIV), Xerencia de Xestión Integrada de Vigo - SERGAS, Spain.
• ⁷ Sub-Directorate of Epidemiology, General Directorate of Public Health, Health Department of the Autonomous Government of Extremadura, Spain.
• ⁸ Neurosciences Research Group 'NC-CHUVI', Instituto de Investigación Biomédica de Vigo (IBIV), Xerencia de Xestión Integrada de Vigo - SERGAS, Spain.
• ⁹ Epidemiological Surveys & Health Statistics Service, General Directorate of Public Health, Autonomous Government of Valencia, Spain; Centre for Public Health Research (CSISP), Autonomous Government of Valencia, Spain.